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Celiac. Figured Out.


sapphire-sky

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sapphire-sky Newbie

Hi everyone,

here's my story. 2 years ago I started to have problems with uncontrolable weight gain. I was always a very skinny girl before(always underweight). And then all of a sudden I started gaining weight fast...38 pounds in 6 months! I also had problems with severe bloating(which I thought was caused by salt and it occured before the weight issues), severe heartburn, mouth ulcers and depression( which I thought was my own fault), I didn't really want anything in life, I had no energy... And being 18 that didn't seem normal. It's not normal at any age.

I went to a genecologist since I have never had regular periods, I got tested 4 a thousand hormones and she found progesterone deficency and ovarian cysts due to lack of ovulation. I told all the docs I've visited about the mouth ulcers and etc...they just told me to take vitamins. And I did, all the time. I ate healthy, I had a diet based on whole grains, I eliminated meat, but nothing changed. I still felt half dead, I still had severe bloating though I limited my salt intake to a minimum. I was still always hungry, I never felt satisfied and I didn't lose any weight... Until lately everything changed when I decided to go on a low carb diet. I eliminated grains, bread etc...ate only veggies, meat, fish, poltry for 2 weeks. And you know what happened? I literally started to deflate...Like a baloon, I forgot about heartburn, the ulcers went away and...for the first time in a long time I didn't feel constant hunger! And then I decided that maybe a whole grain breakfast 2 times a week wouldn't hurt. And guess what? It did!! I couldn't understand it, I ate whole grain pasta for breakfast one day and oatmeal the next and it caused an instant reaction. Bloating, hunger, an overall uncomfortable feeling. The second day was the worst, after eating the oatmeal I started overeating and drinking water, but it seemed like my kidneys and intestines just shut down. My body was just retaing everything... I knew that the only thing I changed in my diet were the grains. Not in my wildest dreams could I imagine that a person can have such an intolerance! Grains are supposed to be healthy, but then why is this happening? I decided to look it up online and I found that I'm not alone. I found the truth when NONE of the doctors could.

I don't live in the US, and I don't know if we have gluten free products. Please give me some helpful tips. How do I make sure I'm not consuming it? How long does it take for all the symptoms to go away?


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ravenwoodglass Mentor

How long it takes to feel better depends on the person and the amount of damage they have and how many body systems have been effected. You may get a lot of relief very quickly but most of us have ups and downs for a while. It is easiest to be gluten free and you will heal quickest by eating as little processed food as possible. Eat meat and fruits, veggies, nuts, beans, rice etc. Many of us find we can not tolerate dairy very well at first as the villi that are damaged in your small intestine also create the enzyme needed to digest dairy. You can add it back in after a month or two and see if you react. You also want to be careful of gluten ingredients in your shampoos, toiletries and makeup. Check out the Products section or do a quick search to see if the stuff you use is something that others have already checked. Also watch out for meds over the counter and script. Have your pharmacist check them or if they have a phone number on the package call the company yourself.

You have found a great site for support and info. Ask any query you may need to and do as much reading as you can. If you tell us what country you are in there may be members there that can help with available gluten-free items. Welcome and I hope you get relief soon.

rsm Newbie

Grains are not always good for you! Read labels, start with meats and veggies, fruit, rice and slowly add things in to see if you can tolerate them. I had to give up dairy as well. It may take months or years to be completely better but it is nice to be on the road to recovery. To know what the problem is. I had doctors telling me to eat lots of wheat fiber, I always felt worse..... Many, many foods are naturally gluten free. There is still a great variety of foods available to us. Welcome to the gluten free world!

Vykt0r Rookie

Quite honestly, this is the story of my life...mostly. Back in the U.S., though.

Kaycee Collaborator

Story of my life too, but not in the US.

I knew my problems had to be related to something, something that I ate everyday. I did not make the connection until I tried dieting, eating naturally less bread and what do you know, I figured it out. It was the gluten getting me.

Cathy

loco-ladi Contributor

My "road to recovery" started a few years ago on a trip "back home" and was invited by my cousin and my grammie to eat lunch, I tried to decline giving my ever famous "eating is like playing russian roulette" speech when my cousin said..... I bet if you eat lunch with us you wont get sick.......

dang but she was right and she hadn't even been diagnosed yet! (she is now thanks to me, lol) The next day she gave me "the list" and darned if for the next few days not eating anything on it, not once did I get sick! had other issues but no sickness and a few other problems decreased as well......

upon arriving home I asked my doctor about it....... he said "I told you its acid reflux nothing more, just take this little pill and you'll feel alllll better"

and I again refused his little miricle pill, they didnt work before I wasn't going to do it again!

I started searching, and found a nice lady at the hospital in the kitchen........ the rest is history, and the dr still doesn't believe me, well, gotta go make an appointment in the am, will see what happens now....... need some blood work done, think I am having b12 issues and maybe iron? not sure what else.

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
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    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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